Tuesday, January 21, 2014

I have started listening to the audiobook of “The Man He Became”, by James Tobin, a new book about Franklin D. Roosevelt’s experience of disability. Specifically, the book chronicles the onset of Roosevelt’s polio in 1921, his rehabilitation … both medically and politically … and his rise to being elected President in 1932. From what I have read about the book, Tobin refutes a lot of popular ideas about FDR’s disability and how he managed peoples’ perceptions of it.

I will write a review / discussion of each of the book’s three parts, on successive Saturdays:

Saturday, January 25 - Part One: Virus and Host

Saturday, February 1 - Part Two: He’s Through

Saturday, February 8 - Part Three: Resurrection

If anyone has read the book, or would like to read along with me, feel free to comment. You can also email me ahead of time if you like so I’ll know whether to expect other people to join the discussion.

If this first "book club" discussion works out, we can move on to other disability-related books, and I'd be open to suggestions for other books to read and discuss.

These aren’t quite “triggers”. They don’t provoke traumatic memories for me. They are things related to disability that make me angry or just rub me the wrong way, and more than just minor, everyday irritations.This is probably going to be the first installment in a series …

1. Parents who sentimentalize their disabled / “special needs” children. Of course, lots of parents dote on their children, especially when they’re really young and adorable. I’m talking about parents who speak and write about children with disabilities in one or both of two specific ways:

- Their tone of voice and choice of words are what we expect in talking about kids 5 and younger, but applied to “kids” of all ages, including adults, who are disabled.

- They refer to their children in spiritual, quasi-religious terms. They are “angels”, “blessings”, or “miracle babies”.

This is definitely not all parents of kids with disabilities, but this tone is pretty prominent in the dialogs from parents that make it to mainstream media and even Internet discussions … and it makes me squirm.

2. When professionals who serve people with cognitive impairments try to refute arguments about freedom and autonomy by explaining that we just don’t understand all the problems they have to deal with, because we have physical disabilities. The implication is that our standards of human rights and dignity are not applicable for people with cognitive impairments / intellectual disabilities. This usually happens when the professionals are trying to justify policies and practices that I think they know on some level are outdated, cruel, and wrong.

3. Whenever people with one kind of disabilities either explicitly or covertly minimize or disparage the concerns of people with other kinds of disabilities. I’ve seen this happen in impatience over the details of specific accommodations in meetings, in questioning the validity of certain kinds of “gray area” disabilities, and in the cultural / experiential differences between people born with disabilities and those who became disabled later in life. I’ve been guilty of all of these things, by the way, but they still bother me a lot.